Knowing the patient well: learning disability nurses’ experiences of caring for terminally ill people with profound learning disabilities in residential care settings

摘要

This thesis reports on a research project guided by the principles of grounded theory. It examines how learning disability nurses care for terminally ill people with profound learning disabilities in two National Health Service residential homes. The aim of the study is to explore the perceived knowledge and skills of this group of nurses. It concerns how they assess, recognise and discover patients’ illnesses and how they provide end of life care needs. A total of 36 learning disability nurses participated in in-depth interviews. ududThematic analysis is achieved through analysis of interview transcripts and reflexive journaling (field notes). The analysis of data suggests that the main theme “longitudinal knowing” leads to the production of “knowing the patient well”. “Longitudinal knowing” is the principal process through which the “normal” and the “pathological” continuum is constructed. The observed changes help learning disability nurses to establish a clear demarcation between learning disability-related behaviour and disease-related behaviour. The strategy of “longitudinal knowing” the patient well helps learning disability nurses to understand what their patients are like before the illness, and after the onset of illness. In addition, this thesis reveals that learning disability nurses draw on different types of knowledge. This knowledge includes “intuition”, “commonsense” knowledge and “formal” knowledge. The analysis of data shows that the four types of knowledge derive from “longitudinal knowing”. They help learning disability nurses to understand and assess patient’s changing health conditions. These types of knowledge serve as tools to help learning disability nurses make appropriate nursing decisions about a patient’s health status. In this study, participants sometimes used a mixture of lay and technical language to describe their observed signs and symptoms.udThe analysis of data shows an area of “uncertainty of knowing”. It concerns an ambiguity about whether the specific signs and symptoms are attributed to the learning disability or to an illness. “Uncertainty of knowing” may be a potential barrier to the delivery of appropriate comfort care. ududThe thesis also reveals an area of “certainty of not knowing”. This refers to moments when participants know for sure where the gaps in knowledge are. The analysis of data shows that participants seek to address this gap by searching for relevant internet resources. They also know that they need educational input in pathophysiology of advance diseases. This helps to reduce the tension created by “uncertainty of knowing” and comfort care. The thesis shows that for all participants, “longitudinal knowing” is fundamental for learning disability nurses in the delivery of appropriate and timely “comfort” end-of-life care.